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Meg
- Female
- Chester, Virginia
- United States
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Meg replied to Steve Greene's discussion 'MCP mutations'
That article is a little frightening in that tissue damage is more severe potentially in Clint. It does bring back my theory that Clint shouldn't play contact sports- and GOSH I was just letting him play paintball...
I'll bring it with me…
Linda Burke commented on Meg's blog post 'Clint'
Hi Meg,
Hope your family is enjoying lots of summer fun together! It would be appreciated if you would go back and update your profile to note the MCP mutation. If you use the search box, I think you'll find some other references to the MCP…
Meg replied to Steve Greene's discussion 'MCP mutations'
I am certainly not an expert on the mutations and what they mean. I only know, from experience, that the MCP mutation can be the easieset route of AHUS to live with. I am told that the message for the AHUS is in the kidney, so the fact that Roger…
Steve Greene commented on Meg's blog post 'Clint'
Meg thanks for sharing your story about both Roger and Clint. There are three things in you story that are very useful to people (like me) that are trying to put all the threads together in my own mind to create a complete picture of the different…
Heather Still commented on Meg's blog post 'Clint'
Hi Meg. Not sure if you remember me from our meeting in Bethesda several years back. So glad to hear that things are going well for Clint!
Meg left a comment for Kelly Crumbaker Hubbard
Kelly, Clint and Roger, my son and husband respectively, have the MCP mutation and except for the problems that Roger encounters because of his transplant, we have normal lives.
I have avoided contact sports with Clint and dehydration. I have also…
Linda Burke commented on Meg's blog post 'Clint'
Welcome Meg to the new interactive website for aHUS patients and their families! Your family has a unique story to tell, and others are sure to benefit from your insights. Desiree is also an adult aHUS patient with a kidney transplant, so that may…
Clint
Clint was diagnosed with Atypical HUS at the age of 4. He is now 11 years old and about to enter 6th grade. His Dad, Roger,has AHUS as well- except Roger had a kidney transplant 18 years ago, and is now dealing with the problem of aging with an old transplant. Roger will be 50 in the end of this month (got his AARP card last night!).Both Clint and Roger have the MCP gene defect and they live relatively normal lives. Clint was sick for a month in September 2002 and has not been sick since…See More
Blog post by Meg
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Meg's Blog
Clint
Clint was diagnosed with Atypical HUS at the age of 4. He is now 11 years old and about to enter 6th grade. His Dad, Roger,has AHUS as well- except Roger had a kidney transplant 18 years ago, and is now dealing with the problem of aging with an old transplant. Roger will be 50 in the end of this month (got his AARP card last night!).
Both Clint and Roger have the MCP gene defect and they live relatively normal lives. Clint was sick for a month in September 2002 and has not been sick… Continue
Both Clint and Roger have the MCP gene defect and they live relatively normal lives. Clint was sick for a month in September 2002 and has not been sick… Continue
Posted on June 10, 2009 at 2:33pm — 4 Comments
Comment Wall (1 comment)
- At 12:09am on September 7, 2009,
Linda Burke said…
- Wishing Clint a great start to a happy and healthy new school year! Best, Linda
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.
Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.
NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "About aHUS" tab at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.
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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.
Did you know...
CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
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It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.
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